4-Wheeler!

Paton (and the other kids) are enjoying their new 4-wheeler!  Thanks so much to Grandpa Bray.

Hannah and Grandpa Bray

We enjoyed hearing Hannah play with her Grandpa Bray at Christmas time.  They sounded so good together.  She's also excited about inheriting her Great-Grandfather's violin, which was made in 1927.

Walking with Mr. Turtle

Look at Paton walk with "Mr. Turtle"!  About a month ago, Paton took off with his new toy walker (Thanks, Janie!).  His therapist plans on ordering him a "real walker" soon, but meanwhile, this one is a great substitute.  He is walking in the library, at church, and to therapy ... it's so exciting!

Last week, we began again the nightly Ponseti bar & sandals.  It has been a year since he last wore this apparatus; last month, the Spina Bifida Clinic orthopaedic doctor said the clubbed foot is "clubbing" more, so time to go back to the bar.  We dreaded his reaction to the unusual positioning of his feet but it was really a breeze.  (Thank you who were praying specifically with us about this.)  Paton even brought the bar to Mom last night when it was time for bed and asked her to put it on!!!  Happily, it should help with the way he keeps getting his feet tangled when walking.  And that's due to the clubbing of his lfeft foot ... as well as low muscle tone in the right.  Both feet lean dramatically right.

He is a smart little guy who talks almost as much as his big sister Charis.  We all enjoy recounting various things he says througout the day.  Today Paton and Mom were working on kind ways to tell other kids to leave his turtle/walker alone ... this due to his infuriated, explosive response to a 4-year-old at the library who tried walking off with his turtle WHILE he was walking with it: "It's not your turtle!!  It's my turtle!"  Hmmm.  We're working on this one.

Please consider a donation to the Spina Bifida Association of Houston that has benefited our family in so many ways.  John and Hannah are bowling in the SBA bowl-a-thon in August and are almost 20% to their goal of $500.00 for our family.  Follow THIS LINK or feel free to send a check and we'll pass it on to them.  The check can be made out to Gulf Coast Houston Spina Bifida Association.  We've got a month to raise the rest of our promised goal -- thank you to those who have already given!

ZIP!

Paton loves watching his his brother and sisters take flight on their new backyard zip line, or watching them swing from their giant swing. The little fella even has his own swing attached to the bottom of the tree house. The treehouse is a work in progress, but eventually we plan on many great campouts out there.

Dynamic Stander

Paton is getting around these days -- at least at the therapy center -- with the help of a "dynamic stander." It seems like he really enjoys it, though he does get a little frustrated at times. The plan is for him to use this while he develops the skills to stand upright for extended periods. It should help him acclimate to getting around in an upright position. Then later he'll transition to a "gait trainer" to help him try to take some steps upright.

The Bray Crew Aug 2011

Everybody is doing well. Paton's crawling around all over the place. And talking! He loves to listen to people intently and then copy words. He loves talking about dogs. He's supposed to stand some, but he doesn't like it much. Going to therapy once a week. We just love the little fella. Love the whole crew!

I can crawl! (If I have to.)

Home Again

Paton is home again. He was released yesterday afternoon. They finally determined that the fever he's been running wasn't a sign of shunt malfunction. They did do some tests to make sure the shunt was working properly. They also feel better about the rate of flow. Paton's feeling much better today, and we are all glad to be back together!

Shunt Adjustment?

Sunday morning the little fella (though he's not quite so little any more!) seemed to be feeling pretty bad. He was listless and the surgery site on his back seemed to be a little puffier and a little redder. Our doctor told us we needed to take him to the ER at TX Childrens. So Jen left the morning service and spent the next 8 hours in the ER. Finally, they decided to admit him so they doctor on call Monday morning could take a look. They did CT brain scans to check for fluid build-up, body xrays to examine the entire length of the shunt, and multiple other tests, including taking blood samples. So Monday the docs decided that his shunt was not draining the fluid at the proper rate, so the adjusted it. This is a non-invasive procedure that involves the use of a magnetic "remote control" -- pretty cool. They kept him for observation all day Monday. However, he began running a fever Sunday night and it has yet to go away. The doctors also thought he was becoming a little dehydrated, so they've now (as of last night) put him on IV fluids. Today they said they are concerned that there might still be something wrong with the shunt. They're going to continue to observe -- if he begins to feel better, he'll be released. If he doesn't seem to improve, they may put a pick in the shunt in order to make sure it's working properly. So, thank you, friends and family, for your prayers. He's doing well. We just hope he can be out soon!

Home Again

We praise the Lord that we are all home together again! Paton was released today. The doctor did another scan and said it looks like the shunt is working -- he said that it will just take some time for his body to adjust again to equilibrium. Hopefully he will feel better in the next day or so.

His siblings were very excited to have little brother (and Mommy!) home again. Hannah is so, so good with him ... just like a little mama. They all love the little fella.

Tonight we were able to host another lady whose little girl also has spina bifida. We met her when Paton was first born. She comes up on the bus all the way from the Texas/Mexico border. We are praying for her and her little one.

Well ... here's hoping that it will be a long time before Paton has to be back in the hospital!




(Feeding Mr. Bear a "gold fish")

Struggling

Well ... the little fella may have to be in for a little longer. Paton threw up a few times yesterday (Sunday) morning. The doctors had said that vomiting could be a sign that the shunt is not working. Paton was very lethargic all morning. But then around noon Jen fed him some pudding -- miracle food! He became his old self again, and had a great time with his siblings all afternoon (see picture below). But then this morning, he started vomiting again. So we are not sure he will be able to go home today, like we hoped. We want to make sure everything is working well so we don't have any more complications ... especially with Christmas coming! So right now we'll just have to "wait and see."

On the Mend

Paton came through his surgery this morning very well. Thank you all for your prayers. The neurologist determined that the valve portion of the shunt was the problem. They inserted a new, "programmable" valve closer to the top of his head (I think it would be really cool to have a remote control for your head!). The drainage tube was then rerouted to that new valve. The old shunt valve (in the picture below you can see the bandage nearer the back of his head) was left in place, as there is the danger of hemorrhaging at the site. It will only be removed if it becomes a problem. The little fella's sleeping a lot today, along with his mama (neither got much sleep last night!). God is good.

Shunt Revision

Well, our little fella's almost a year old. It's been a fantastic year! His smiles are pure joy, and his laugh is infectious. We've just had the best time.

But the other day he had a pediatric visit, and the doctor noted that his head growth was literally "off the chart." She immediately recommended a scan. The results showed a buildup of fluid in the ventricles -- hydrocephalus. This is usually a sign of shunt malfunction. She suggested we take him to the TX Children's ER. Jen & Paton arrived last night, and they did a head ultrasound. The results confirmed the hydrocephalus, and further tests confirmed that there is some kind of blockage in the shunt system.

So the little fella's in surgery now as I write this. According to the Spina Bifida Association, "about 40 percent of shunts will fail and need changing (or revision) within one year, 60 percent within five years and 80-85 percent within 10 years. About 20 percent of people with Spina Bifida will need more than one shunt revision." So I guess we're pretty close to being "average" at this point.

Keep us in your prayers.

I'll try to post a little later today.

Paton's Friend Scott

We've mentioned earlier Paton's friend Scott, from Eden, NC. He's had spina bifida for about 40 years now. He's been a great encouragement to us. We had a chance to sit and visit with him and his family when we took a trip out East a few weeks back. It was wonderful to see him. And his parents were every bit as encouraging as he was. They said, "We envy you. We wish we were young again and just beginning the wonderful adventure of raising a child with spina bifida!" It was just a joy to spend time with the family. Their dependence on God's grace has seen them all through. May He be gracious to us as well

Some of Paton's Family (Dad's side)

The Whole Crew

Some Family Pictures

Close Up

Take Me Out

... to the ball game! Thanks, Joan, and Houston/Gulf Coast Spina Bifida Association, for the tickets to the Astros game tonight. (Unfortunately, we lost 4-0).

Paton and Paton

This is Paton Bray with his new friend Paton Ngian. Both are named after John Paton. The "other" Paton's the son of friends Ping & Melanie. Enjoyed a great time together today!